spirituality in palliative care

Kathy Myers looks at how we address the spiritual needs of those at the end of their lives.

The term ‘spirituality’ has no universally agreed definition, although plenty has been written from philosophical, religious, and medical perspectives. For the purposes of this article, I’ll refer to spirituality in palliative care as finding meaning and hope in the face of death.

Spirituality, and spiritual distress in particular, can take many forms and manifests uniquely in every individual. Its importance in palliative care has been recognised since the early 1960s. Dame Cicely Saunders, one of the founders of modern palliative medicine, formulated the concept of ‘total pain’ comprising physical, psychological, social, and spiritual pain, each type able to influence the other, when a patient told her ‘All of me is wrong’. [1]

For many years, I worked as a consultant in palliative medicine in a large district general hospital. Typically, my team’s initial involvement with patients who were approaching the end of life was to catalyse and ‘broker’ agreement with all concerned through three processes: recognising that the patient was dying, supporting everyone in relinquishing futile investigations and treatments, and then building hope from a point of often-perceived failure and hopelessness.

Building hope in palliative care has a number of components: non-abandonment, symptom control, care planning, tackling ‘unfinished business’, and, for some, exploring hope beyond death. I will touch on all of these, fully recognising that the opportunities we have may be seriously limited by the environment we work in.

It is common and understandable for people facing up to their own death to carry burdens of fear, uncertainty, grief, and anxiety for those they leave behind. Their energy and concentration are also likely to be limited. They may have no past experience or language to draw on to articulate their emotional and spiritual needs. Feelings of isolation and hopelessness can be acute. Robert Twycross, another founder of modern palliative medicine, articulated the concept of ‘non-abandonment’ with patients in this situation in mind: ‘Whatever happens, we will stay beside you every step of the way. Together, we will get through this.’ [2] Good palliative care takes teamwork, and it is essential to know who else is ‘on the team’, both professionals and others, and to establish team working quickly so that the patient never feels abandoned.

Treating pressing physical symptoms is an essential precursor to providing all other kinds of care. People are generally more able to address psychological, social, and spiritual issues when they are physically comfortable. Good symptom control often builds trust, reduces fear and enables people to think more clearly.

When opportunities for conversations arise, patients need skilled listeners and careful questioners who will be kind and patient. Even if we are involved for only a short time, we may be an important link in the chain of trust that enables another team member to help further later on. Conversations around care planning can build hope and confidence, exploring where the person wishes to die and with whom, or about important dates (weddings, birthdays, etc.) or ‘bucket list’ items to plan for.

For some patients, spiritual pain may comprise the larger part of their ‘total pain’. It may also contribute significantly to physical symptoms, anxiety and depression. Spiritual pain may manifest as the questioning or loss of previously held beliefs, anger at God or ‘fate’, questioning why their illness has happened, feeling overwhelming hopelessness, frustration, anger, guilt, and loss of control.

The following questions are examples of simple ways to ‘take gentle soundings’ and can show the patient that the door is open to talk about spirituality and spiritual pain if they wish to.

■      How are you feeling about your life right now?

■      What kind of things do you look to for support when you’ve faced hard situations in your life before?

■      Are you the kind of person who has a faith or beliefs that help you make sense of the world?

■      Are you the kind of person who finds prayer helpful?

The GMC guidelines on personal beliefs and medical practice provide essential advice. They do not prohibit asking questions about spirituality but require that professional boundaries are respected. [3] Sometimes, a chaplain or faith leader can be invaluable for opening up conversations about faith, beliefs, or spiritual pain. However, patients often choose to whom they will talk, regardless of job description. In one hospice where I worked, the remarkable housekeeper was often the chief confidante.

As with every type of pain, spiritual pain may have specific causes that need carefully teasing out. Frequently, these relate to relationships with people. Byock [4] describes four simple tasks of ‘unfinished business’ that can provide an invaluable framework in helping anyone with spiritual pain related to relationships: Please forgive me. I forgive you. Thank you. I love you.

The value of these tasks is that they are essentially practical and direct the patient towards doing or saying something that gives them a degree of control over their situation. They offer the hope of resolution, reconciliation, and ‘finishing well’. Hospices are frequently places of laughter, joy, and tears, as patients are encouraged to find creative ways of saying ‘thank you’ and ‘I love you’ to those closest to them.

The power of forgiving and being forgiven can sometimes be startling in bringing peace where there is distress. This was brought home to me by a patient who had particularly marked agitation, restlessness and distress in the last few days of his life, with no obvious physical cause. One afternoon, a visiting minister spent time with him, prayed a prayer of forgiveness over him, and anointed him with oil. His agitation and distress settled within minutes.

Spiritual pain is sometimes related to a broken relationship with God. Sadly, fewer people than in previous generations have memories of sacraments, hymns and prayers from earlier times in their lives, which can be of great help in beginning a journey back to God. Asking ‘What would you like to say to God right now?’ may help some to take the first steps.

Confessing Christians are not immune from spiritual pain as their own death draws near. They may carry additional burdens of shame and guilt because of it. In John Bunyan’s Pilgrim’s Progress, the hero, Christian, is overcome with fear, doubt and apparitions of evil as he finds himself sinking in the waters of the River (death) that he must cross to reach the Heavenly City. His travelling companion, Hopeful, reminds him of the promises and presence of Jesus so that Christian can refocus his gaze to see Jesus again, take courage, and reach the far side without fear. [5] A valuable resource in this context is Dying Well by John Wyatt. [6] He outlines the benefits of the medieval practice of ‘ars moriendi’ – the art of dying well – to enable believers to maintain hope and faith as death draws near.

It’s important to recognise that spiritual pain can be an occupational hazard for healthcare professionals. I experienced this for myself during my training in palliative medicine. The injustice and horror of a particular patient’s terminal illness struck me with unexpected force, and I became very angry and confused with God. My previous understanding of suffering and death proved woefully inadequate, and I was forced to go back to theological basics to find a way through. It took months of Bible study and reading (I will forever be grateful to the writings of Don Carson [7] and Joni Eareckson Tada [8] to learn to walk daily in the light of the great hope of Revelation 21:3-5, where God ‘will wipe every tear from their eyes. There will be no more death, or mourning or crying or pain, for the old order of things has passed away’ and he is ‘making everything new!’

Very occasionally in our careers, we may have the joy of explaining these verses to a patient. We can certainly pray for such opportunities but must not berate ourselves if they do not come. God is sovereign and knows each person’s heart. As patients we have known well leave our care, we have the privilege of being able to take them to the foot of the cross in prayer. We can leave them there, commending them to the love and mercy of Jesus, knowing that he always does what is right. We can draw spiritual strength from the same risen Jesus and hope to continue the work he has called us to do. ›